Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Update On Post And New Question About Endoscopy

michelleatwt

Recommended Posts

michelleatwt Newbie
michelleatwt
Posted

My son is being tested for Celiac disease. He has had chronic diahrea for about 2 years now which has the worst smell in the history of the world (seriously whole house smells like a portapotty), weight loss and no height growth, but a constant appetite...he is ALWAYS hungry and will eat until I MAKE him stop, he continues to say he is hungry, then within 8 hours he flushes his system again. He bruises extremely easily and his hair is starting to fall out all over my poor babys head. He gets irritated by little things easily, he has a very bloated stomach and stick like extremities, he has horribly dry skin and gets these rashes on his bum that bleed and puss and are nothing like diaper rash. He has been tested for diabetes, parasites and a bunch of other things. I finally took ALL the symptoms in together (didn't think any of them were related before) and I have been waiting on his Celiac test for a week now, and just stressing. Does this sound like Celiac or does anyone know what else it could be? Doc is pretty sure thats what it is, but they have been saying that for 2 years now about everything and I am beginning to wonder if they will ever diagnose my son with anything. Thanks to anyone who can provide ANY advice

---------------------------------------------------------------------------------------------------

UPDATE:

Ok, so one blood test came back high, one came back negative and one can back inconclusive and they were unable to read the levels. Doctor still supsects Celiac and has scheduled a Endoscopy for next Friday. How long does it take to get the results on those? How long do they take? Is it painful for him? Thanks so much!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


michelleatwt Newbie
michelleatwt
Posted
  • Author

and also...is it an inpatient or outpatient procedure? Thanks! ;)

Kipp Newbie
Kipp
Posted
My son is being tested for Celiac disease. He has had chronic diahrea for about 2 years now which has the worst smell in the history of the world (seriously whole house smells like a portapotty), weight loss and no height growth, but a constant appetite...he is ALWAYS hungry and will eat until I MAKE him stop, he continues to say he is hungry, then within 8 hours he flushes his system again. He bruises extremely easily and his hair is starting to fall out all over my poor babys head. He gets irritated by little things easily, he has a very bloated stomach and stick like extremities, he has horribly dry skin and gets these rashes on his bum that bleed and puss and are nothing like diaper rash. He has been tested for diabetes, parasites and a bunch of other things. I finally took ALL the symptoms in together (didn't think any of them were related before) and I have been waiting on his Celiac test for a week now, and just stressing. Does this sound like Celiac or does anyone know what else it could be? Doc is pretty sure thats what it is, but they have been saying that for 2 years now about everything and I am beginning to wonder if they will ever diagnose my son with anything. Thanks to anyone who can provide ANY advice

---------------------------------------------------------------------------------------------------

UPDATE:

Ok, so one blood test came back high, one came back negative and one can back inconclusive and they were unable to read the levels. Doctor still supsects Celiac and has scheduled a Endoscopy for next Friday. How long does it take to get the results on those? How long do they take? Is it painful for him? Thanks so much!

Kipp Newbie
Kipp
Posted

Hi, I have not posted on here before but I really wanted to share as short as I can my experience. My son who is now 13 has been gluten free for about a year and a half along with myself in support of him. He had many of the problems you mention about your son and there were many times I wanted to pull my hair out in frustration! From a baby he had lots of problems from heartburn, vomiting, ear infections, diareah, headaches ect... the list goes on and he was very small and had the tummy. Long, long story very short a few years ago he had a blood test done and the Dr mentioned putting him on a gluten free died (I had no clue what gluten was). We tried it but not cutting out all gluten. He missed 5 weeks of school in 5th grade and we had him tested through entero lab, which you can find online and send out a stool sample. I think my husband and I needed proof but in the end when his results came back as gluten intolerant we did the diet and that was all the proof we needed. Within a week of being on it his symptoms disappeared. He had dozens of problems and everything is better (even his cronic ear problems are gone). He grew 6" in less then a year and is still growing. It is to us all amazing. Try it for a couple weeks, you will see the difference if that is his problem. You can always put him back on it if you want that test done but in the end whether you have it done or not there is no drug for celiac the medicine for celiac is a gluten free diet and it works! Good luck to you and I hope your son is feeling better soon

Rondar2001 Apprentice
Rondar2001
Posted

Hi,

Our daughter's experience with the biopsy was that it was basically a piece of cake. Her's was done in our city's children's hospital and we went home the same day.

The hospital had us come in for a group session a week before her procedure. They had all the parents off to one side of the room filling out all the paperwork, while the kids were in a circle reviewing what they could expect for their type of procedure. They showed them the masks that would put them to sleep and what activities they could do until they went in to the OR (i.e., DVDs, colouring). We all went on a tour of the area so we would know where to go, where the parents wait, where the popsicles are kept for afterwards, etc.

The day of her procedure we arrived at the hospital at 7 am. She was taken to the OR at about 9. Less than an hour later she was back in her bed and we were home by noon. She did sleep a few hours that afternoon, but had no pain or issues afterwards. The next day she was back to school.

The only prep was they can't eat after midnight the night before. I was told that they try to schedule the youngest patients earliest so that it is a little easier on them. She was eating shortly after the procedure.

Our doctor saw visual damage and said that we should make her eat gluten free right away. The official biopsy results were ready about 10 days later.

Hope this helps and good luck.

michelleatwt Newbie
michelleatwt
Posted
  • Author

I have made the decision regardless of the biopsy results I will be starting him on the diet, if he gets better that is all the proof I need and I am almost certain that is what he has. I am going to hold off just until next Friday for his endoscopy, but as soon as he leaves regardless of what they tell me I am starting him on it. I am not going to wait years for them to diagnose him while he suffers. Thanks so much for your response!!!

Kipp Newbie
Kipp
Posted

Way to go!, you have me in tears just remembering what it feels like to be where your at. Your his mom trust what you know! :D

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nasalady Contributor
nasalady
Posted
I have made the decision regardless of the biopsy results I will be starting him on the diet, if he gets better that is all the proof I need and I am almost certain that is what he has. I am going to hold off just until next Friday for his endoscopy, but as soon as he leaves regardless of what they tell me I am starting him on it. I am not going to wait years for them to diagnose him while he suffers. Thanks so much for your response!!!

FYI, going gluten free can be a bit of a challenge, because gluten can be anywhere.....you may have already realized that you'll have to replace a lot of your kitchen utensils, pots and pans, toaster, etc. Or you could buy a set for him and set up a gluten-free area in your kitchen where no gluten is allowed. That's harder (having both gluten and non-gluten foods in your kitchen) because of the risk of cross-contamination....but you'll have to decide what's right for your family.

But don't be discouraged! It definitely gets easier! As to meal planning, the easiest way to start is to identify which foods you eat now that are naturally gluten free (meat, fish, chicken, eggs, nuts and nut butters, veggies, fruit, rice, polenta, potatoes, corn tortillas, etc.). For processed foods such as corn tortillas always read labels to make sure they haven't put any wheat in there.

Here's a great article on how to go gluten free (a post from Karina's Kitchen):

Open Original Shared Link

Good luck with everything...please keep us posted!

JoAnn

michelleatwt Newbie
michelleatwt
Posted
  • Author

I would like to thank everyone for their kind words and great advice!! You have no idea how appreciated it is. :D

chiroptera Apprentice
chiroptera
Posted

I just wanted to mention that a lot of people with Celiac/gluten intolerance are also lactose intolerant. So that's just something you may want to keep in the back of your mind in case (hopefully) your little does better on the gluten-free diet, but you still sense there is room for improvement. Then, sometimes once the gut helps from the gluten damage, people can go back and eat dairy/lactose again with no problems.

Very very best of luck!!!!!!!!!!!!!!!!!!

And, although we too tested thru Enterolab and chose not to have our children have biopsies, I have read and been assured that it is very safe for them, should you decide to do that.

seezee Explorer
seezee
Posted

We found out a few months ago. The doctor told us the + celiac blood tests are 94-97% accurate - so there is about a one in twenty chance it's something else besides celiac when you have a positive blood test. The doctors felt really strongly about getting the biopsy to confirm celiac. There are some very rare liver and pancreatic problems that they tested my daughter for in addition to the biopsy that can cause the + celiac blood test results. (hers were all negative) She stopped eating gluten immediately after all the tests are done and is gaining weight and getting stronger and is feeling way better.

The endoscopy was pretty straight forward. She went in in the morning and was out by noon. She doesn't have any symptoms of lactose intolerance, so they said not to stop dairy. I cried when I found out and felt overwhelmed but it's actually OK. It is always better to know what it is and that you can fix it and know how. We had an appointment with a nutritionist who explained how to read labels and set up the kitchen that really helped. We may make another one to make sure that we feed her a good/balanced diet. I notice most gluten-free products are rice based and void of nutrients.

  • 2 weeks later...
Lindaa Newbie
Lindaa
Posted

Hi,

Please understand firstly that I am no medical expert but just another person with celiac hoping to shed some light on your son

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.